Hello everyone, first of all let me just say what a wonderful site this is and it can be so helpful. My 6yo Rubie was diagnosed with double delta f508 in early feb. It's been a while since I have posted, I just needed some time for it all to sink in. It's been tough for us but harder on our daughter. Right now shes on enzymes and she has gained 2lbs in a month 1/2..she's now 37lbs..yey! Before she was diagnosed she would poop right after she ate and never absorbed any of the nutients. Now with her enzymes she has skipped a day here and there and never goes right after her meals anymore. She used to eat everything in site and was always hungry. Now how wonderful it is to hear her say those two little words "i'm full". Shes going to be getting the Hill rom vest, we are just waiting for for our insurance company to get their butts in gear. Shes on her multi vitamin, albuteroll and on april 12th we'll be getting her pulmozyme with the nebulizer. All this is so overwhelming but from reading on this site I've realized that these meds work and you all are living proof. Yesterday was our second visit to our cf center in milwaukee, her doc wants to do a CT on Rubies sinusis because she always sounds nasally and gets stuffed up a lot. They think she may have sinisitus and her post nasal drip is draining on to her lungs. It just hurts that it took 6 years before we found out she had CF. What are the treatments for sinisitus and is it worse to have it when you have CF?
I wish you all well and hope you all have a Happy Easter.
Liz- mom to Rubie 6 w/cf
I wish you all well and hope you all have a Happy Easter.
Liz- mom to Rubie 6 w/cf